I'm new here - Lots of Complex Partials and deja vu several times per week...

Topic:

About Medial Temporal Lobe Epilepsy & Me

Based on my investigations and studies, I can say with almost 100% certainty that I’m suffering from Medial Temporal Lobe Epilepsy and have been now for around 12 years. I’m on 2000mg of Sodium Valproate and 50mg of Lamotragine perday. I think it’s controlling my gran mal seizures but nothing else.

MTLE in many cases presents itself without typical changes of “Mesial Temporal Sclerosis”, this basically means the brain will appear undamaged and won’t show up any abnormalities. As a result, MRI scans etc will often not pick up on this type of epilepsy.

This type of epilepsy that doesn’t present changes has also been termed as Paradoxical Mesial Temporal Lobe Epilepsy.

I have been suffering from this since around age 15 and as I write this am 27 years old, although, it has came much more to prominence since around age 20. This is interesting as generally this type of epilepsy is known to present it itself initially at a later age.

The studies around this that I have read may suggest an early event or problem with the brain or head can lead to this type of epilepsy. I may just be being paranoid but at birth I was the result of a 12+ hour labour, use of forceps to the head, came out a funny blue-ish colour and spent a fair while getting oxygen (or something along those lines – To be honest, I can’t really remember. This is just what my mum told me...).

Déjà Vu

Before I go any further with this, I will be mentioning the words “déjà vu” many times throughout this piece and I’ll do my best to try and describe the initial feeling of it that I get...

It is a feeling that, to be honest, is really difficult to describe. At first for example, I can turn a corner and see someone. I’ve never seen that person before and I know that but then, all the noises and surroundings are a flashback, everything is returning to me, the smells, even though I know I must be imagining them are here again. The worst thing about this is that my stomach is suffering a fright of out of the blue nervousness and my body feels really light, the front of my head above my eyes has a strange dizzy feeling. All of this has happened at the same time and within a millisecond.

Simple Partial Seizures

I can relate to many aspects & symptoms of simple partial seizure when relative to MTLE. Mainly mnestic linked like:

·Simple partial seizures spreading throughout either the rest of the temporal lobe or the whole brain and therefore leading to further types of seizures (regularly Complex Partial, see the next section)

With me, 90% of the time, a simple partial seizure will lead to nothing. It’s almost like I feel the quick initial flash of déjà vu hit me and my automatic reaction is something like me saying to myself in my head, “JAMES! QUICK! THINK OF SOMETHING ELSE! DON’T LET THIS TAKE OVER YOUR HEAD!”, then a quick shake of the head later it’s gone. But sadly sometimes, I just don’t get that shake of the head in time and this is when I’m doing things like playing football or at the gym and my focus and concentration is almost at 100% on what I’m doing. When I don’t get the “shake of the head” done in time, it 90% of the time leads to…

Complex Partial Seizures

Apparently these types of seizures impair consciousness to some extent, meaning altering the persons ability to interact with their surroundings. They usually begin with a simple partial seizure and then basically the simple partial seizure spreads to a larger portion of the temporal lobe. Apparently, signs may include, motionless staring, altered ability to respond, unusual speech or behaviours.

Going by the above description, I can safely tell you that I’ve had 100+ of these. I’d also say that these are probably 90% of the time preceded/triggered by simple partial seizures.

I often feel like a total dick after one of these, particularly on the many occasions when it’s happened when I’ve been playing football and I have to exit the game out of the blue. Like it or not, it does spoil the atmosphere for the guys playing as it gives a lot of people who’ve not seen things like this before a real scare and can spoil it in the same way as someone going off with a serious injury.

Another great example of how to really feel embarrassed and like a public fool is when it happens to you in a Tesco Express in the city centre (this happened at around 6pm on Mon 17/08/2009). One minute I’m walking round the shop, the next minute I’m sitting with a Tesco staff member giving me a bottle of water in the back of the shop. What?

This type of seizure will almost always leave me with an after-feeling of serious disappointment, a bit like a really bad unavoidable downer. I don’t know if the downer feeling is a result of, “oh for fucks sake, not again!!!” or if it’s just something in the brain that’s triggered automatically as a result of the seizure. It usually takes at least 20-30 minutes for the downer to start going away and I can get a bit emotional and inside I am generally full of rage at the shit card I’ve been dealt in life with this kind of rubbish.

Following complex partial seizures, I can often remember the simple partial seizure déjà vu feeling and the scenario but after the next stage kicks in, it’s all forgotten and I have no recollection of what’s happened.

The next 3-5 days succeeding the complex partial seizures will be littered with 1 second flashes and flickers of déjà vu which I guess could be classed as mini simple partial seizures. These annoy me and also to some extent scare me as I automatically fear another complex partial seizure or worse.

Secondary Generalized Tonic-Clonic Seizures

These seizures are ones which begin in the temporal lobe and then spread to the whole brain. These generally begin with a simple partial or complex partial seizure but then the arms, legs etc stiffen in a flexed or extended position. This is followed by coarse jerking etc.

I, in a way am fortunate to only suffer seizures of this severity in my sleep (nocturnally) most of the time. I’ve probably had 50 of these in the last 10 years of which around only 5-10 have happened while I’ve been awake.

The times it has happened when I’ve been awake I’ve, as you can probably guess, no recollection of. It’s happened in work before which was very embarrassing.

In my sleep it’s always the same story and same results. My Dad’s the only person to have witnessed any of my nocturnal seizures (and he’s seen quite a few of them!), even though he was sleeping in the room next door, he heard me falling out of bed and hitting the floor (it didn’t wake me up though!).

The post sleep-seizure war wounds are always the same

·Sweating like rain running down a window

·The inside of my mouth and tongue bitten to pieces and blood on my face as a result

·Pain from leg tension and cramping resulting in me feeling like I’ve ran a marathon

·2 day headaches

·General feeling of, for the want of a better word “depression” for a while afterwards.

Comments

I'm new here too :) Nice to meet you, you are very organized and know yourself and your seizures well. Impressive! I'm with you on the *depression* after a tonic-clonic... after the bitten up cheek and weak body, that was the overall feeling that brought me to this site tonight. ;)

Wow can I relate to the SP and CP sections or what. Thanks for putting into words exactly how it feels for me.

I especially can relate to this part....

One minute I’m walking round the shop, the next minute I’m sitting with a Tesco staff member giving me a bottle of water in the back of the shop. What? This type of seizure will almost always leave me with an after-feeling of serious disappointment, a bit like a really bad unavoidable downer. I don’t know if the downer feeling is a result of, “oh for fucks sake, not again!!!” or if it’s just something in the brain that’s triggered automatically as a result of the seizure. It usually takes at least 20-30 minutes for the downer to start going away and I can get a bit emotional and inside I am generally full of rage at the shit card I’ve been dealt in life with this kind of rubbish.

Thanks guys for your comments, I am just glad there are other people out there who are
on the same boat (I was going to call it a sinking ship but I guess I
should be more positive). I've had this for 12 years now with no
medication success but I went to see the professor last week and he told
me there a loads of medicines etc still to try which sounded positive
and he then proceeded to keep me on the same medication I've been on for
5 years. I was disappointed but I've to go back in January so fingers
crossed.

I hope all you guys are doing well and keeping healthy.

Do any of you guys ever drink alcohol? I've only tried to have a drink a
couple of times in the last year and every time after about 2 beers my
stomach turns and it ends my night due to the high dosage I'm on daily.

jayemzs posted (in part): About Medial Temporal Lobe Epilepsy & Me - Based on my investigations and studies, I can say with almost 100% certainty that I’m suffering from Medial Temporal Lobe Epilepsy and have been now for around 12 years. I’m on 2000mg of Sodium Valproate and 50mg of Lamotragine perday. I think it’s controlling my gran mal seizures but nothing else. MTLE in many cases presents itself without typical changes of “Mesial Temporal Sclerosis”, this basically means the brain will appear undamaged and won’t show up any abnormalities. As a result, MRI scans etc will often not pick up on this type of epilepsy. This type of epilepsy that doesn’t present changes has also been termed as Paradoxical Mesial Temporal Lobe Epilepsy. I have been suffering from this since around age 15 and as I write this am 27 years old, although, it has came much more to prominence since around age 20. This is interesting as generally this type of epilepsy is known to present it itself initially at a later age. The studies around this that I have read may suggest an early event or problem with the brain or head can lead to this type of epilepsy. I may just be being paranoid but at birth I was the result of a 12+ hour labour, use of forceps to the head, came out a funny blue-ish colour and spent a fair while getting oxygen (or something along those lines – To be honest, I can’t really remember. This is just what my mum told me...). --- My general impression is that your line of thinking is correct. My birth was complicated. It was over three days, part of a multiple birth (identical twins), one or more xrays, delivery by forceps. My twin brother is normal; I have ADHD Inattentive, central auditory processing disorder (CAPD), mild dyspraxia, a tad of hemiparesis (weakness, not paralysis) left side of body and a tad of constructional apraxia. There is a new, growing area called sports concussions which is beginning to look at what subtle concussions/repeated sports concussions can do. Some of the sports concussions appear to cause effects days, weeks, months, or years later which are very similar to complex partials and/or aspects of ADHD Inattentive. Recall reading a book about epilepsy called Nerves In Collision by Walter C. Alvarez, M.D. which addresses many of the concepts which you write about. This whole area of Complex Partials/TLE vs ADHD Inattentive is real, but for some reason, not much talked about at all. For my ADHD Inattentive, I did try a number of epilepsy medicines which, for me, did not work. What worked for me surprisingly (not a cure) was the old weak stimulant/alerting agent medicine, coffee - caffeine compounds. Caffeine works for me noticeably better than Ritalin, Dexedrine, and Adderall - known stronger stimulants. Apparently for those with epilepsy, stimulants can lower the seizure threshold but, for ADHD, the same stimulants can work a little, reducing distractibility a little and increasing attention span a little. Best wishes. - pgd

I hope it helps to know you're not alone. I was a "face presentation" baby and was dragged out with foreceps. My head was deformed and I had bright read square markes that took days to fade. That is head trauma number one of which I am aware.

Many more followed. I have been having seizures and migraines for as long as can remember and my first "confirmed" memory is at six months old.

It is know that brain injuries can cause epilepsy. It sounds like you need a med that is good for Temporal Lobe Seizures. Trileptal is a good one. Make sure you get the brand name and take it Q8 hours instead of twice a day. Zibenix or Zebenix or Eslicarbazepine, when it is approved, will probably help. Low dose Keppra XR brand name only might help too.

You sound like me. Poorly defined focii and lots of different seizure types. I am on so much medication people think I'm drunk. I'm on 2000mg Keppra and 3mg Klonopin a day and I am a 45 Kilo female. I'm so weak I can hardly walk. I'm still having nocturnal TCs. I'm having weird SPs and CPs during the day, which I've been staving off with tiny doses of Lorazepam, but I'm running out of it and don't see my doc for two more weeks.

I just don't want to die. I used to be called a genius. Now people call me a crazy drunk and a dimwit. Huh.